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Help! My bladder hurts and I have to pee all the time

I'm sorry to tell you, but your daughter has interstitial cystitis. Inter what? By the time we could actually say the two words together - we had discovered that we were in for a loooong haul.

Generally considered an older lady's disease - my 19 year old daughter had won the lottery without even buying a ticket. How do you get Interstitial Cystitis (IC) and why do you get it? Questions we posed to our general practitioner and to the urologist we were referred to.

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Basically IC is a disease of the lining of the bladder. For some reason yet to be determined, the lining which acts as a shield for your bladder decides not to regenerate any new growth. What does this lining protect? Well, it helps protect your bladder from acids, spicy foods and other things that we eat that can hurt our bladder.

Let's go over some of the symptoms:
1. a whole lot of pelvic pain
2. feeling like a 2 litre of water is sitting on your bladder all the time
3. intense burning
4. peeing all the time - because you have this feeling like you gotta go and you gotta go now!

Those were some of her basic symptoms. Of course as time progressed she became more depressed, extremely moody and irritable - and rightly so. Due to a lack of sleep and spending half the night running up and down the stairs to go to the bathroom she almost never had a full night's sleep.

Enrolled in first year university, her marks began to slip because she couldn't concentrate. The medications she tried didn't help matters much. Eventually she had to drop out of school and work because she just couldn't function properly.

We tried so many different treatments and nothing seemed to work. Her urologist Dr. D. ordered a hydra distention - basically a procedure where they put you under general anesthetic and pump your bladder full of fluid to stretch the lining. Now this has a two fold approach. One to see how much your bladder can hold and two to help the lining in the bladder to repair itself.

Unfortunately all the hydra distention told us is that our daughter had advanced stages of IC. She maintains to this day that was the most painful procedure she has ever undergone.

To relieve her pain we tried all kinds of medications, herbal remedies and chinese medicine. We found that acupuncture worked the best as long as she went once a week. While it worked well - it still didn't alleviate all the pain or discomfort - it just managed it so it was bearable.

After going through countless tests, we pleaded with our urologist to please send our daughter to Toronto where she could be a candidate for a neurostimulator - fancy word for pacemaker for your bladder.

While we were cautioned it would not be a cure - it could definitely help with the symptoms - yet we couldn't be guaranteed it would work for her. But we felt it was worth the risk.

After meeting with Dr. Hassouna - an amazing doctor - and presenting him with her voiding diary, he maintained that she would definitely be a great candidate.

We started with a trial neurostimulator. Through day surgery they implant a wire into your sacral nerve area and attach it to an external battery pack. You wear this discreet (ha ha) device for 3-4 days and track how much you need to go to the bathroom. If you see an improvement of 50% - you move on to the next stage.

Hallelujah - we saw a more than 50% improvement and she was fast tracked because we were from out of town - surgery was performed within 2 days and a permanant neurostimulator was implanted.

While there were a few complications - those were quickly nipped in the bud and today I am happy to tell you that we have a new woman. Oh my goodness - it's like a miracle. She is happy, getting great marks and can go on with her life. She is even getting married this summer.

In Canada - the neurostimulator is free but we were told it costs about $60,000. I can't imagine having to pay for it - but it's so much better than what we thought the outcome would be - a daughter on permanent disability.

I would highly recommend going the neurostimulator route - it truly gave her her life back.

hello,
thank you for posting this story. i have had the same symptoms and i know exactly what you mean, but i have only had it for 2 weeks. At first I really thought it was nothing, it just stung a little but i thought i might have it from a cold or something, when i was smaller it happened to me that once a year it happened to me on two days or something like that. But now it got worse, i got some medicine without prescription from the pharmacy but tomorrow i am seeing a doctor, i didnt know it would be this bad. your story really scared me and i am even more scared to find out what is happening me tomorrow.

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I was also diagnoised with IC about a year ago. I'm so glad you were able to get your daughter to a doc that could help her so quickly. It seems many women suffer for along time before being properly diagnoised!

I found remission after taking the medicine Elmiron and taking the aloe vera capsules. It took 4 months each time I increased my Elmiron dose, to feel any difference, but I finally found the right dose and am in remission enjoying oranges, salad dressings and pain free days!!!

Thanks for sharing your story and increasing peoples awareness of this horrible disease.

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It seems you have much better attitudes toward health care in Canada than in the U.S. I was told by a Canadian that the big reason why the cost of health care is manageable there, and often free, is because - correct me if I'm wrong - doctors there cannot charge the ridiculously high fees that our doctors do. Doctors here have tremendous overhead: the machines, labs, staff, etc. before they can even make money; and I've known kids who go into medicine like accountants first, physicians second. So, that you were able to get such great care for your daughter in Toronto puts your southern neighbors to shame!

I am so happy for your daughter! We've had some issues with our daughter's health a couple of years ago - and are still paying the bills!

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